This was written by a woman I hold dear to my heart.
She has been my inspiration so many times-someone I lean on and have reached out to when things were just not right. She has a way of writing that just seams to touch my heart and make it melt. She is remarkeable and is truly a HERO in my book......each day her words keep me pressing on. I know you will be touched and will understand as you read this:
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The Teachings of Ethan
From the very minute, I learned of Ethan's existence... my lifechanged in ways I couldn't even even conceived of. I was so overjoyed. So excited. I knew things this go round, that I didn't knowbefore. I was older, more mature. More aware. I could do thingsdifferently. I would have a beautiful nursery. I procured everythingnew. I would have time with this baby. I would make time. I couldchange every little mistake I'd done before, and rectify all myparental misgivings.
That is hilarious to me now.
When Ethan's birth, was such a catastrophe, and my whole world turnedpear shape, even then I didn't have a real idea about the years thatwould come after. About the changes that would take place with in me,and even in the family.
I think one of the first lessons that Ethan taught me, was trust andfaith. I learned in the first three months of Ethan's life while hewas at Primary Children's Medical Center, to trust my spiritualconvictions. Not just to pray, and expect the answers that I wanted,but to recognize that no matter what happens, that life isn't in ourhands.
After the hospital, and things calmed down I was somewhat at a loss asto what to do with this new life I was in charge of. I gainedknowledge. I learned and re-learned and re-learned again- medicalterms, I gained the understanding of communication. How do speak tomedical personal, and how to listen. I learned over the course of thefirst year, about the substantial effects, that would effect Ethan forhis lifetime.
With this, came confusion and concern. Worry andheartache. Pain and anguish and once again, the reminders of our firstlessons in trust and faith.
Unconditional love- ranks right up there at the top of the list. I'velearned to love, despite the obsticals. I thought that unconditionallove was a given. It isn't. It comes with challenges and curve balls.I've been amazed, with how much love Ethan has to give. I'm constantly- surprised and delighted with Ethan's genuine acceptance and love-ofeveryone. He has no barriers. Everyone who is kind to him is rewardedhis trust, smile, and love with out effort.
Another lesson is perspective. This is one I keep having to re-learn.Perspective. Understanding that every family has their own challenges.Private and more open. That driving down the road, wishing you couldbe like this family or that family is simply foolish. Each familystruggles. We can't possibly- compare. That has been a big one for me.Learning that NO matter what challenges we have, so does everyoneelse, those that might seem simple and easy to me.. are NOT simple andeasy to others. I've learned this in spades.
I've learned to look beyond. I see things differently. I see specialneeds kids in every corner and crevis of this planet. Everywhere I go,it's like I have a unique set of spectacles that can help me searchthem out. They used to be invisible. I used to briskly walk amongstthe masses, and never take a minute to reach out to people. That is nolonger the case. Ethan has given me the gift of Awareness. The worldthat I live in now, is bright and beautiful. Filled with all flowersof the earth. Colors and textures and beauty that I didn't see before.
Patience. Ethan has taught me patience. In every sense of the word.Patience with my fellow men. With my family members. With members ofmy community. It has not been a pretty lesson, and I am stillchallenged with it, and probably always will be.
I've learned Passion from Ethan. That might sound strange, but it isvery true. I've learned to advocate and educate other's about myexperience with Ethan. I've learned to help other's find answers totheir queries. I've learned to challenge local, state and federalgovernment agencies, when I think there is something unfair. I havetestified to congress about gaps in service, and the needs thatfamilies face. I have educated myself on the way our State functions,and what it takes to get policy amended. This again, is a newexperience for me, and I have found it fascinating.
The most important thing that Ethan has taught us, has beenConsciousness. I'm very aware of each tiny tiny thing that Ethan does.Things that I did not even notice with my other children, are hugemilestones to be marked, with Ethan. I take NOTHING for granted. Everytime Ethan rolls over, moves his legs, drinks his bottle. Every timehe does something new for the first time, is marked with awe andcelebration. Each bottle of pears he eats, bath he takes, mess hemakes, stereo speaker he destroys are things that I am ardently awareof. They are the fuel that keeps us going. They are the results of allthe efforts. They are beautiful testaments to all I believe in andhold dear.Ethan has taught us, that everything in life that we used to value, ismeaningless- and that the things we took for granted- are really themost important.
These are remarkable lessons to learn. All from a little boy, who Iwas told would never be successful in life- if he lived at all.
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Beautiful-makes my eyes tear up.
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